Telling the story of intersectional stigma in HIV-associated Kaposi's sarcoma in western Kenya: a convergent mixed-methods approach.
Telling the story of intersectional stigma in HIV-associated Kaposi's sarcoma in western Kenya: a convergent mixed-methods approach.
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DOI：
10.1002/jia2.25918
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发表时间：
2022-07
影响因子：
6
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对艾滋病毒感染者和癌症患者来说，耻辱感可能是多方面的。卡波西肉瘤（KS）是撒哈拉以南非洲最常见的艾滋病相关癌症之一，通常表现为可见的皮肤病变，可能使人们面临污名化的风险。通过这种方式，艾滋病毒相关的KS是独特的，因为KS患者可以同时经历与艾滋病毒，癌症和皮肤病相关的耻辱。本研究的目的是描述艾滋病毒相关，癌症相关和皮肤病相关的耻辱在艾滋病毒和KS患者中的交叉性。我们使用了一种收敛的混合方法，该方法嵌套在肯尼亚西部艾滋病毒相关KS患者的纵向研究中。在2019年2月至2020年12月期间，我们收集了所有参与者的定量调查，并对有目的的参与者样本进行了半结构化访谈。定量调查改编自简化的Berger HIV耻辱量表，以评估总体耻辱，HIV相关耻辱，癌症相关耻辱和皮肤病相关耻辱。定性数据编码使用耻辱的健康耻辱和歧视框架的结构。在88个半结构化访谈中，污名化是艾滋病毒相关KS患者诊断和治疗KS的主要障碍。参与者的耻辱故事主要是艾滋病毒相关的耻辱，而不是癌症或皮肤病相关的耻辱。然而，117名参与者中HIV相关（中位数：28.00; IQR：28.0，34.0）、癌症相关（中位数：28.0; IQR：28.0，34.8）和皮肤病相关污名（中位数：28.0; IQR：27.0，34.0）的量化污名评分相似。在半结构化访谈中，癌症相关和皮肤病相关的耻辱感是更微妙的贡献者;癌症相关的耻辱感与宿命论有关，皮肤相关的耻辱感与可见疾病有关。参与者报告说，随着时间的推移，皮肤病变的消退有助于减轻耻辱感;自KS诊断以来，总体耻辱感的定量评分显着下降（校正后的β =-0.15，p <0.001）。这项研究强调了混合方法在更好地理解艾滋病毒感染者和癌症患者的耻辱感方面可以发挥的作用。虽然与艾滋病毒相关的耻辱感可能主导肯尼亚KS患者的耻辱感，但耻辱感的交叉体验可能是微妙的，仅凭定量评估可能不足以理解某些情况下的交叉耻辱感。
The experience of stigma can be multifaceted for people with HIV and cancer. Kaposi's sarcoma (KS), one of the most common HIV‐associated cancers in sub‐Saharan Africa, often presents with visible skin lesions that may put people at risk for stigmatization. In this way, HIV‐associated KS is unique, as people with KS can experience stigma associated with HIV, cancer, and skin disease simultaneously. The aim of this study is to characterize the intersectionality of HIV‐related, cancer‐related and skin disease‐related stigma in people living with HIV and KS. We used a convergent mixed‐methods approach nested within a longitudinal study of people with HIV‐associated KS in western Kenya. Between February 2019 and December 2020, we collected quantitative surveys among all participants and conducted semi‐structured interviews among a purposive sample of participants. Quantitative surveys were adapted from the abridged Berger HIV Stigma Scale to assess overall stigma, HIV‐related stigma, cancer‐related stigma, and skin disease‐related stigma. Qualitative data were coded using stigma constructs from the Health Stigma and Discrimination Framework. In 88 semi‐structured interviews, stigma was a major barrier to KS diagnosis and treatment among people with HIV‐associated KS. Participant's stories of stigma were dominated by HIV‐related stigma, more than cancer‐related or skin disease‐related stigma. However, quantitative stigma scores among the 117 participants were similar for HIV‐related (Median: 28.00; IQR: 28.0, 34.0), cancer‐related (Median: 28.0; IQR: 28.0, 34.8), and skin disease‐related stigma (Median: 28.0; IQR: 27.0, 34.0). In semi‐structured interviews, cancer‐related and skin disease‐related stigma were more subtle contributors; cancer‐related stigma was linked to fatalism and skin‐related stigma was linked to visible disease. Participants reported resolution of skin lesions contributed to lessening stigma over time; there was a significant decline in quantitative scores of overall stigma in time since KS diagnosis (adjusted β = –0.15, p <0.001). This study highlights the role mixed‐method approaches can play in better understanding stigma in people living with both HIV and cancer. While HIV‐related stigma may dominate perceptions of stigma among people with KS in Kenya, intersectional experiences of stigma may be subtle, and quantitative evaluation alone may be insufficient to understand intersectional stigma in certain contexts.